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SoWhoCaresAnyway E9; The Five Giants · SoWhoCaresAnyway

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Hello and welcome to So Who Cares Anyway, the podcast that shares learning, innovation and ideas from the world of health and social care and beyond.
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My name is Ruth Germain and I'm inviting you to join me each week with my inspirational guests to hear about who cares.
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What they do, their passions, their knowledge and ideas, and importantly, the difference they are making to improve the health and wellbeing of people in our communities.
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I consider each of my guests to be incredible individuals working with people in new ways or with key messages to share.
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People from healthcare, social care, the voluntary sector, community groups, and more.
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To join me each week to find out, so who cares.
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Anyway, to find out more about me, who I am and what I do, please head over to my website, www.reflectiveruthconsultancy.com,
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where you can also catch up with previous episodes and read my blogs.
Hello and welcome to my next episode of So Who Cares.
Anyway, and today I'm absolutely delighted to introduce you to Emma Snow.
Now I first met Emma Snow via LinkedIn, as I quite often do.
Emma had put up a response to a chat that was about the five Giants, and I was really interested in this.
And Emma is a CEO, for the five giants that she set up.
And so I met with Emma, we had a chat briefly and Emma's story, not only about the five giants, but also Emma's story about how she found out about that.
And some of the things that you'll hear about later on in this podcast really fascinated me.
So.
I was fascinated by the five giants, but also fascinated by Emma's story.
So I'm going to pass over to Emma.
Emma, I wonder if you just introduce yourself and give a little bit more of your background, and how you got to the five giants and where you are today.
Thank you.
Brilliant.
Thank you so much for you.
Thank you for inviting me on this podcast.
So, I'm working on the five giants, so they're the Beverage Report, Social Determinants of Health, and Systems Thinking.
And, as well as being professional, including working in charities, including Hospice and Terence Higgins Trust and NHS Acute Trust, I'm also an end of life care patient myself, as I've got Huntington's disease.
So, due to the underlying genetic disease, even though I don't have symptoms of it yet, I developed other multiple long term conditions early, including autoimmune conditions, and became unemployed due to my disabilities in 2017.
The main issue was I needed to work from home, but this wasn't an option for most jobs pre COVID.
I then set up a charity to help other people who are unemployed.
with disabilities as well and getting back to work in South London where I was living at the time.
So this worked well for a few years but we couldn't get long term funding beyond pilots as it was the DWP's responsibility and they cut all the funding in austerity.
So we started campaigning for reinstatement of this funding.
Many people like me ended up unemployed due to being stuck on hospital waiting lists.
So we realized that we needed to sort out the NHST and then there were many other barriers for people.
So we decided we needed to make it wider to cover all the barriers facing unemployed people with disabilities.
Though the five Giants and I learned about the five Giants in systems thinking on a guys in St.
Thomas's course.
with public health teams, the organisations with multiple long term conditions ourselves, helping other people with multiple long term conditions.
And guys in St Thomas's thought that we as patients are the best people to run systems thinking groups.
However, COVID then struck, so it wasn't possible to work with the hospitals as planned.
And then I moved to Gloucestershire, so I could afford to live in a wheelchair accessible home, which I'll need later.
And since then, for the past few years, I've been trying to start the first free systems thinking training for the NHS and for acute trusts in the UK with 30 trusts and, people in Wales interest in sharing already.
And currently, all systems thinking training is delivered by quite expensive consultants.
So most boards and execs haven't been trained and they don't know what systems thinking is.
even though systems thinking is the reason ICSs are called integrated care systems.
And I was working at Gloucestershire hospitals in digital program management.
So I drafted this training for Gloucestershire ICS, and I was hoping to be able to finish it and launch it there.
So a job was created, for me to do it, but, it was held back because all the new jobs have been Being cut across the NHS because of budget cuts, and even the ones that would save money.
So my planned role was cut.
So I therefore went on and started a separate think tank, the Five Giants Foundation, which is led by people with disabilities ourselves.
And I've been working on this for six months so far, because I think the Five Giants and systems thinking is so important to the future of NHS and social care, and it would save much more money than it costs.
Thank you, Emma.
That's a really good summary.
I know when you spoke to me before of your background,, there's quite a lot more.
And what I was really interested as well when we spoke was the fact that, you are somebody with a long term condition.
And it's that passion that has driven you.
But actually, when you spoke about your career, it sounds like your career had been quite driven about helping and supporting people.
Anyway, so this wasn't something that just came because of the fact that you had a long term condition.
I think that really drove you, but you'd already been helping and supporting people in your previous roles or doing things that would make that difference.
Is that right? Yeah, very much so Ruth.
So I've worked in the charity sector all my life.
And what I found out was when I first wanted to work for charities and I spent a bit of time, volunteering for an Oxfam shop when I was a student and the manager there said, actually, do you know what? There aren't graduate trainees schemes in charities at the moment.
So the best thing to do is go and get a different profession and then come back in.
So I went to train as a charity specialist accountant in the city of London.
I was auditing lots of different charities, including, hospitals and international development charities, and community charities and schools, all kinds of things.
So, I then moved on to working in the charity sector and I became, finance director at the Refugee Council, and then at Terence Higgins Trust, and then at, a large hospice in London.
So, that background has, really Stood me in good stead and unlike in NHS.
trust, which is so huge that everyone has very separated off jobs.
The finance jobs that I was doing when I was finance director was basically a lot of service design and strategy and transformation, and measuring outcomes.
So not just the pound amounts of money, but What's actually happened to the person as a result of the services, has it improved their lives or not? And so through that I got very interested, in all of the different kind of, background to that.
So things like Theory of Change, which was very popular at the time and was being rolled out across the charity sector and there's then being adopted in health and social care too.
And Theory of Change kind of leads on to systems thinking, which is, the,, big Brother really that, theory of change has come from.
And then the Five Giants.
Basically the different charities that I worked at, including the ones I've mentioned, also shelter as well.
They tackle all the five giants, but I didn't know why those charities been set up to tackle those particular issues.,
I just thought, people thought it was a good idea at the time.
It was only once I learned about the five giants that I thought, Oh, that explains why all these charities do what they do, and why it helps people say.
Yeah, it was really interesting to find out and that's why I really want to tell more people about it because those of us that are designing services could really do with knowing about it.
Okay, so that brings me to my next question, Emma, which is about those five giants.
But before I do, I just want to talk a little bit about, I think the things that really came through and shone for me when I was speaking to you was the fact that, you've just mentioned about being a finance officer, but actually that transformation and then measuring outcomes and measuring those outcomes about actually what difference did it make to people and what was that about? And I know from listening to you and definitely, as being somebody who is as.
as service user, if I'm using the right term, you really have that do with approach that Adam Lentz spoke about on one of my previous episodes.
And I found that going through, that's really seems to be something that people are talking about.
And I think, the Five Giants really helps to underpin some of that approach and why it's important.
So my next question is, would you explain a bit more about the Five Giants and also a bit about your story about how you found out? about the five giants and what, and that connection that you found as well.
We'd really like to share that.
Yeah, brilliant.
Thanks Rhi.
So the five giants, are what we call the social determinants of health today.
And they were first identified in the beverage report.
He was the one who called it the five giants and the beverage report in 1942.
That's what led to Nye Bevan setting up the NHS in 1948.
Nye Beverley's colleagues weren't just setting up the NHS, they were also setting up the whole of the welfare state to tackle all five giants.
And so the five giants in the Beveridge report are housing, sanitation, the environment, unemployment, poverty, health and social care services, and education.
And in the Beveridge report, they were given old fashioned names, but that's what we would call them now.
And, basically what Beverage and others that had done the work that led to the beverage report were saying was that you have to tackle all five giants at once because otherwise they lead from one to the other.
So if you have a disability, you're more likely to become unemployed.
If you're unemployed, you're more likely to experience poverty because you don't have as much money coming into the home.
And then if you experience poverty, you're more likely to experience more disability.
And so, all of these things linked together.
And, the reason that the five giants are really important now is that we've forgotten a lot about them in austerity, and we've cut a lot of those services that were previously tackling the five giants, and we need to put it back.
And that's because when we look at the proportion of our health outcomes, that come from health services, it's only 10%.
The other 90 percent of health outcomes come from the rest of the five giants.
And so if we really want to reduce the pressure on the NHS, it's really essential to tackle all of those five giants.
But it not just reduces the pressure on the NHS, but it also Improves outcomes for everyone because it prevents people getting more and more health issues.
And, it also saves money because prevention is cheaper than cure.
So like we've been discussing with the outcomes, I went through this cycle of working out how to measure outcomes better for people.
So we went from measuring, did someone come to some appointments to what happened as a result of those appointments, having an outcome star, which is much more person centered measure.
Actually, one of the messages of the five giants and systems thinking is that what we should be doing is just preventing that person having those issues in the first place.
So then they don't even really need any outcome measures as an individual.
You measure the outcomes as a society instead.
And, really the only outcome, or the only two outcomes, that can.
easily be measured on a society wide basis or that all of these things lead to is did the person get a disability early and did the person die early? And both those things are easily measurable across the population, but one of the issues is that you can't link, which individual was it whose health issue was prevented.
So you can't say this exact person didn't have a heart attack and therefore didn't go to A& E this many times.
And you've got to look at it on a population wide basis instead across a wider area.
So what that means is that when people are bidding for contracts and services and so on, we need to think more broadly and think actually this person is doing this bit of the service.
So this organization is doing this bit of service.,
but actually what is the point of this service overall? And even if that organization can't measure Exactly how they contribute, then looking at it on like a sort of regional basis or, local basis instead across all people in that area.
And then, on the five giants, one of the places that they came from before the beverage report, I found out when I started writing a book about the five giants and systems thinking, So I didn't know what my great-granddad had done, but I knew that he'd helped I Bev and set up the NHS, that's what I've been told, by my grandmother.
And he'd lived in mid Wales, so I thought, oh, well, he must have done something local to help my bev and set up the NHS.
So once I was older and working in health and social care myself, then I thought, oh, well.
It's great.
My great granddad helped Nye Bevan set up the NHS, but it's probably him and like thousands of other people also helped in their own local areas.
So I wasn't expecting to find much out, but then I found out that he'd done some TB statistics and Then, one of my colleagues at a hospital who was interested in NHS history, I said to him, well,, he was in Wales and he was doing TB death statistics, and it linked to the beverage report somehow, and I don't know how, or, linked to setting up the NHS.
And my colleague said, oh, it's probably the Welsh TB inquiry.
Anyway, if my colleague hadn't said that, I would never have realised the connection.
But that's what it turned out.
My great granddad did all of the TB death statistics that led to something called the Welsh TB inquiry in the late 1930s, which is where the five giants were identified.
And then the Leader, one of the leaders of the Welsh TB inquiry, so there was an MP and a doctor, and the MP, Clem Davies, he then went on to work with Beveridge behind the scenes.
No one from Wales had been appointed to the Beveridge committee because people in Wales were quite discriminated against at the time, and So, CL was a liberal like beverage and so he passed all the information to beverage and they came up with the five giants concept together.
So that was really exciting to find out.
And the reason that my great-granddad started doing these TB death statistics, was because he had originally set up the first ever.
national health service pilot for the UK, which was a service for TB in Wales in 1910.
He was called John Tomley and the service that he set up was called the WNMA.
So the Welsh National Memorial Association.
And basically they had the most cutting edge hospital care for TB in Wales, something that England didn't have at all.
But then 20 years later, what they were finding was that even though Wales had this amazing hospital care, TB deaths weren't going down as fast as they were in England.
So why was this? So that's how they found out that things aren't always about hospital care, it's also about the rest of the five giants.
And so, my great grandad John Tomley, he campaigned for a government inquiry into these TB death statistics and why they were worse in Wales.
And then, in order to get himself a platform where he would be better respected and able, to campaign further for this government inquiry, he managed to get himself elected as, the overall leader of the friendly societies across the whole of the UK.
So I didn't understand that when I was younger, because my granny had said to me, oh, they're like the Masons.
And I just thought, oh, it's something to do with like funny handshakes and nothing to do with the NHS.
So it was only when I watched a documentary, which was Ruth Jones's episode of Who Do You Think You Are? Basically she was saying that her granddad was one of the friendly society leaders in South Wales, and, that the friendly societies gave almost all the healthcare for workers, before the NHS.
So basically my great-granddad, was like equivalent to the chief executive, the NHS, before the NHS.
And that was why it did link into helping NY Bev and set up the NHS say and finding the five giants.
So it was amazing to find out that the things that I was writing about were exactly what they'd been using and although systems thinking was something that we think was invented like in the 1960s and 70s, actually, at the time the NHS was first set up and they were using the five giants, really, they were using the techniques of systems thinking.
Because they were thinking about the bigger picture and how things affect people over their lives and how to prevent something rather than cure it, which are all key concepts in systems thinking.
That's an absolutely fascinating story.
The fact that, you've talked at the beginning about Nia Bevan and setting up the NHS and how they really understood.
I'll start to talk about how you needed to think about these five giants and not just take them individually, but actually all need to be done together and then going through your own family history to find out the person that instigated that original inquiry that led to the five giants was your own great grandfather, which, it's just incredible.
And it does show that interest and it's probably been somehow nurtured through the line down to yourself.
Because as I say, right from the beginning, at a young age, you were volunteering in the charity sector because you had this passion and drive to help and support others and recognize that need.
That is exactly how it happened actually, because when I was thinking about it, although that line of my family is the one with Huntington's disease, which is why we haven't really passed down family history, because people have died early, then, which is why I didn't know about my great granddad's full contribution, then actually that's where I have inherited, the interest in being involved in charities from definitely.
And it certainly shines through as well.
So I'm going to ask you a little bit more.
You talked a bit earlier on about, outcomes measures.
And I'm just going to ask about those because you mentioned a couple of outcome measures that there were things like were people diagnosed with a disability and you talked about that as perhaps being heart disease.
And did they die early, but what other outcomes measures have you come up with, if any, that are useful? So how do we know that these five giants are being met? So yes, I've been on this journey where I've looked at all kinds of different outcome measures and then come back to actually early disability and early death.
only, really good ones across society.
And that was why people used them in the past.
When the NHS was first set up, but actually that doesn't mean that's the only things that we can measure because the idea with systems thinking is that you're looking at a whole system that leads to in the case of health and social care, we should be looking at the whole system that leads to health outcomes, and therefore, reduces early disability and reduces early death.
But you can measure things on the way.
If you have a decent model of the system, and that's one of the issues at the moment, is that we don't really have decent models of the system when we're thinking about just what one organization does to one person at one time, rather than thinking about, their whole experience with the system.
the system.
And so the system that we often think about, when we're working in health and social care is the integrated care system because that's what's just been set up.
We all get told you must think about the system and you must do systems leadership and systems working and so on.
But actually the issue is that still isn't really the system.
The system is The whole of the five giants.
So, not just health and social care, but, housing, sanitation, environment, unemployment, poverty, and education as well.
And so we need to think about how, all of these things.
Linked together for people.
So basically the five giants is the definition of the system that we are looking at in systems thinking.
With systems thinking, there's a number of different techniques that we can use to try and change things and work out which, things we want to change.
The things we want to change are called points of leverage.
And so, what happens with systems thinking is that, there's a number of different tools.
One of the most useful tools to start with is called, causal flow loop diagrams.
And basically it's like process mapping and process mapping is like a linear thing where you go from one end of.
the page through and follow arrows show to different boxes and then you end up at the other end of the process and you think right that's it that person's had that process lovely we've finished our work and what we don't realize is that actually in some places there's circular processes and so systems thinking causal flow loop diagrams help us see these circular processes and there's A number of different ones that we want to teach people about and one of the most useful explains a lot of stuff in the NHS and is vicious circles and so that's basically where something just ends up going in a circle, and it just gets worse and worse and worse.
So, for example, starting at the top of the circle, we might have,, prevention self management home care is underfunded in the NHS.
And then that leads round to more people start getting ill from other things.
And then more people end up needing GP appointments and the GP appointments come full, so hospital outpatient appointments, and then more people end up coming to A& E.
A& E looks like it's full and so politicians come under pressure to give A& E more funding.
So that sounds great but with systems thinking we see that there's a last arrow that connects that cycle together which we don't normally think about and that's that the funding comes from a fixed pot.
So when the politicians say give more funding to A& E that means they're taking more funding from prevention, self management and home care.
unless they give, actually give proper extra funding to A& E.
But that's rare.
Normally it's just they're taking from something else.
So what that means is that prevention self management home care become even more underfunded.
And prevention self management home care are much cheaper than A& E per person.
So A& E is the most expensive service.
So what happens is that as the cycle keeps on going round and round and round, more and more people end up using A& E, but fewer and fewer people can be funded for the available budget, so more people end up falling out of the service and not getting any service at all.
And so, the outcomes Keep worsening, even though the amount of money being spent is the same or more.
So systems thinking helps us look at these kinds of cycles and find what's called points of leverage, which is where the application of a relatively small amount of resources can turn the system the other way round and start the vicious cycle turning around into a virtuous cycle.
circle instead, which is what we really want to see.
So, for example, on the system that I've described there, one of the points of leverage that we need to use is to stop the underfunding of prevention and self management and home care.
So either, don't allocate more money to A& E, or if we are allocating more money to A& E, allocate it as extra funding, don't keep cutting prevention, self management and home care.
And we need to prioritise putting the funding back into those cheaper services in order to reduce the demand in A& E and in order to reduce the overall cost in the system.
And the idea with, coming up with these systems thinking diagrams together is that it should be done by systems thinking group, which is like 8 to 10 people, ideally led by people who are patients or service users ourselves, because we're the ones who see what happens to us.
And therefore we understand the whole cycle that we're in.
And including a mixture of.
Frontline staff from the different services that are supporting them and, other patients and managers from the different services and potentially top leaders as well.
And in that case, perhaps politicians too, because they are involved in those decisions.
And then the group comes up with this diagram of this is how things work and how the whole cycle works, and then people get more understanding and then people ideally then go away and say, actually, my organization can do this, my organization can do that.
and start to.
See some change,, especially if there's funders in the room, for example, they might say, Oh, actually, we have got some spare money.
And we could, put a bit more into prevention, self management, home care to try and kickstart this cycle again.
Thank you, Emma.
That's really fascinating to think about how you measure and to think about the whole cycle and bring in that.
system together.
So what I'm thinking about there is a conversation I had with Mark Spencer, who is a GP and he realized that a lot of what they were doing in general practice wasn't always working.
They weren't retaining their staff and it wasn't actually things that focused on what really mattered.
So they changed their conversations up there around to what matters to you.
And using their money.
in different ways to do different things.
So they went against the grain, went against what was expected of them, but instead started going out to people.
So I'm wondering when you're talking about, having service users there, which is absolutely paramount, people that are using the service.
But it's also about creating healthier communities, which you've spoken about.
So to give you an example, one of the things that Mark spoke about was, They got together with people and one of the things that people said is, they would quite like to do singing.
They weren't a singer, but they'd quite like to sing.
And they set up a singing group, along with lots of other things within the community where they live.
And now one of the things that he might do as a GP, or other people might do, because they've very much come together, probably around these five giants that you speak about, is other people in the system might also say, Oh, there's a singing group you might want to join.
Rather than saying,, What about, taking this medication or you need to do that or you need to that actually got A whole host of solutions.
So when you're talking about that and you're thinking, have you got any examples of things that might relate to that or that people have perhaps come up with when you've been having those conversations? Yeah, definitely Ruth.
So, one of the big issues is that, when lots of us were trying to redesign services, to be cheaper during austerity.
So for example, when I was working at Terrence Higgins Trust, if we didn't have enough money to fund the same service anymore, and the service involved, say, some doctors and nurses time with people, and also some other people's time with a person, say, peer support we would tend to prioritise the doctors and nurses time and not the peer supporters, because We would think, well, people have got to have the doctor or nurse, but they can manage without the peer support.
But actually what that does is it drives it into the doctor and nurse end up, doing the work of the peer supporter that they could have done to help that person and things, like having social groups, like you've mentioned, that kind of thing.
And, Actually, the doctors and nurses don't have time for that.
So, it ends up not being done.
And then the person, starts to feel more depressed about their condition.
They haven't got other friends that they can ask, if they aren't quite sure how to manage their condition.
And sometimes doctors and nurses, even though they might see a lot of patients with that condition, they don't know what it's like day to day.
So, for example, I'm on a restricted diet 'cause I'm Celiac and I've got other issues that I've got to restrict my diet even more for.
And so, I know when I talk to other people who are Celiac, I'll say, oh, right, okay.
Where can we get stuff that is not just gluten-free, but it's also not? Got to have no cross contamination, so it's quite complicated.
And so we all know where to get that stuff and we tell each other, but a doctor or a nurse wouldn't know that offhand.
So, that's where those things can really help patients with their health, because it means they can stick to their medically recommended diet, for example, and, have, social connections with other people that are in a similar situation, which is very helpful for their mental health and prevents them developing more and more, conditions under multiple long term conditions.
Thank you, Emma.
That's really useful.
I think I was a bit long winded, actually, how I asked you that, but, people being connected to people and having those networks, I think are one of the things that seems to be key around how we do that.
So it's the networks of people that have got similar problems, similar things going on, whether they need medical.
But also things, perhaps people that have got similar things going on in their life or life issues or affected by those five giants, perhaps in ways that they need support with and actually having that peer support in that way, is really useful.
And then the other thing I think about is how that links in with, When we've got those people and they've got that understanding and started to build that, that really, I think helps to empower.
Cause you've talked about how you're a group and I'm just wondering, that seems to help to empower you when you come to the NHS or another big institution, to talk about, what it is that you need.
If when you're a lone voice, that's probably quite hard, but actually by the system supporting people like you.
You are more empowered to support the system..
Yeah, exactly.
And it's that sort of virtuous circle thing again.
And actually I'm doing a talk to, end of life care doctors in the Southwest, about how we can use five giants and, systems thinking in end of life care in a couple of days time.
And, One of the points that I want to make to them is that actually, as people who've got fatal diseases ourselves, the NHS might think, oh, we're a bit of a write off.
And, so there's not much we can do, but actually from our own points of view, we really want to stop people having the same diseases that we've had ourselves, for example.
So.
helping us raise our voices and campaign helps more people not have those same diseases, but it also helps us, potentially live longer as well, or, be in better health from being less depressed because we've got something that we're really keen on doing and feel like, our lives have got purpose.
So there's definitely, there's a lot to be said for it.
And as you said there about you living your lives less depressed, it's about you living better and more fulfilled lives.
So, having that fulfilled life where you feel that, you have meaning and you have purpose and you have networks of people around you That you can link in with be they local community or of course now that we have internet and things and we can actually spread that wider.
So I think that's a really nice thing that you're talking about and you're really bringing it down to that personal level.
So.
My final questions are you talked about the five giants, but what would be your key messages to, I'm going to start us at the two, two levels.
One is those people that are working on the frontline.
are delivering care and doing things for people because we often talk about person centered care.
And a lot of those people, and I know in the past, I think you haven't been as purpose centered as can, but actually within the system, you realize you can't do everything.
What would be your key messages to them on what you think they need to do? And from that systems level, What would be your key messages at systems level and I don't know which way you want to approach it So that's why I asked both questions at once whether you want to do the you know Your key messages at systems and then the other way around or vice versa, Yeah, thank you.
So basically it's all interconnected and As we've learned from systems thinking and between systems level and individual level on the front line.
And so one of the key things that needs to be done at systems level is to roll out free systems thinking training to as many people as possible across the NHS.
What happens at the moment is that systems thinking training is only available through paid consultants.
They're quite expensive, so there might be, say, like in Gloucestershire, there were, originally planned to be 20 places, on the course, but there was so much demand that they ended up paying for 40 places, but that was the maximum.
But those 40 places, had to cover over 10, 000 staff.
So when you think about, whether it systems thinking is going to penetrate anywhere with 40 being trained, then if you think about like my experience of then going back to meetings after having helped facilitate this training and thinking, Oh, great, we're going to be able to take forward discussions about systems thinking none of the meetings that I went to.
Had other people that had been on the systems thinking course.
So I might as well have been speaking a different language.
No one understood systems thinking.
They didn't understand why it was important.
People knew a bit about systems leadership, but they thought, Well, if I'm not a leader, it's not my job to do systems leadership.
and There wasn't enough time to do systems thinking anyway, so everyone felt that, it was something that maybe the NHS would come to maybe 10 or 20 years down the line, but isn't the kind of thing that we can roll out immediately.
And so that's why free systems thinking training would really be helpful.
be a massive game changer, so that, there's a suite of free e learning, and also some train the trainer materials so that, after people have done the initial e learning, then other people that are NHS members of staff could be trained to do that training and then deliver it to a large number of people, in each local area over time.
And as well as the staff, At the NHS Trusts and the local authority, we also need to consider, all of the other staff that come into contact with that patient.
So, for example, voluntary and community sector staff, and if they've got carers, often the carers are employed by a different organisation too.
So, or they're self employed, so we need to include them, and then the most important people as well in this whole thing are patients and then secondly, carers.
So, in terms of the family carers, so patients and family carers then need to have access to this training to they don't have, access to internal trust HR systems, and so they can't use the learning that trust staff can and say, and that's where we need to have the training freely available, like on the open internet where anyone can access it.
Then once people are trained, the next thing to do after that is to set up systems thinking groups and as the training's happening, ideally some test systems thinking groups should be starting up so people can be practicing this and the training could even include doing a systems thinking group.
That's one of the possibilities that we've got for the intermediate face to face training, and Then people can get started on real problems with their service and in their local area.
But also work with the other services that are supporting the same people to try and see the bigger picture overall.
And work out what those bigger issues are for people.
And, when it comes.
to, outcome measures as well.
Then working with the public health team locally in order to measure early deaths and early disability, is really important because they're the ones that have got all the statistics for that.
Those of us who are working for individual organizations can't see it.
Some stuff is available publicly online, but it doesn't have all the detail.
So for example, for someone like me, it might show that I died of pneumonia, but actually, I've got Huntington's disease and that's why, I got pneumonia.
And so without looking at the underlying cause of death, people could end up thinking, Oh yeah, let's do lots of stuff to treat new pneumonia, rather than thinking, let's get rid of genetic diseases, which is the actual reason.
So it's important for everyone to work together in each local area, and then there also needs to be, people working together nationally, raising people's voices nationally as well, patients voices, so, for example, with the DWP, it makes decisions nationally about, what level of benefits people will receive and the grants that they used to be for people to have wheelchairs and things like that all got scrapped by the DWP during austerity.
And so those kind of grants need to be brought back as well so that people can be looked after and in their own homes and that their family members won't injure themselves and caring for them too.
So that it.
Relieves the pressure on A& E, and, the whole of the NHS as well.
Thank you.
That's really helpful.
So just to sum up, I think your key messages are that the system needs to make sure that everybody understands systems thinking, and once they've done that, then they need to actually include them in that systems thinking so they can start to think about what their problems are, or what's happening and linking with other people across the system to say, well, this is happening here and find out what else it is that they might be able to do differently to actually make that difference.
So really empowering, which is about the system, allowing that grassroots things to grow up and say, actually, this is what we need.
This is what we want.
This is what matters.
Yeah.
And this is what works for us.
Yeah, yeah, exactly.
And, what I didn't mention as well is also working out, how to take that joined up approach.
And sometimes the joined up approach needs to come from a level higher than the people who are directly involved in the ICS as well.
So sometimes it's people like, MPs and local councillors, who are best placed.
to have that wider role of making sure that things work in a way that's joined up for people across, not just health and social care, but also the rest of the five giants as well.
And that goes back to that leverage that you talked about earlier on.
So having the right people in the room or the conversations with those right people that are able to, you can say,, this is the point that we need it to happen, but actually you're the person that can leverage that to make that happen and make that difference.
Is that right? Yeah, exactly.
So thank you Emma.
That's been absolutely fascinating.
I want to thank you for coming on here to share your personal story as well, because you've spoken quite openly about, having the Huntsman's and what that might mean.
And that must be quite difficult in itself, but at the same time to hear that and hear the passion and everything that comes through.
Yeah.
Along with your family story about your granddad has been a great grandfather, should I say, has been absolutely fascinating.
So thank you for so much for being open and for sharing what is absolutely a wealth of, experience and knowledge that you have.
And, So I just want to thank you for coming in and joining me on the show.
Oh, brilliant.
Thank you so much for having me, Ruth.
I've really enjoyed it.
Thank you.
You're welcome.
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